isolated 5yo

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my ds is five and was diagnosed last year with AS. it took forever to get him to go to school and be in the classroom almost full time. he is now integrated into the classroom but still spends most of his time by himself with his ea. over the last couple months he has taken to going to his room after school on his own which was fine with me because it seems to avoid the whole after school meltdown thing he used to do. now i am having a different problem though. he won't come out. he won't come downstairs when i call him to ask him about his day or say hi. he won't tell me anything about his day other than "i had a good fun day." which is his generic way of answering to shut me up and he says it regardless of if he had a good day or spent the whole day in detention. he refuses to eat with us, he will not eat if i don't let him take his food up to his room but i really don't like him eating upstairs. he won't answer any of my questions at all. the only time he talks to me is to ask for a drink. it's very annoying and quite frankly, it's hurtful. at times i feel like why is he even here if he doesn't want to be around any of us then it makes me wonder if he would prefer to be put back into foster care to bounce around from home to home again because no one had the patience to deal with him. i know perhaps i should be glad that he is not down here breaking stuff and constantly yelling/crying and beating on my other kids but it feels like there must be something severly wrong that he would just seemingly completely detatch himself from all of us in favour of living in isolation. any thoughts?

Don't put him back in foster care. That's the worse thing you can do. It would be like returning a puppy to the SPCA.

Figuratively speaking, you have backed him into a corner and he has found a hole to hide in to save his sanity.

He is probably severely stressed and over stimulated when he comes home from school, as a person with AS only has a finite amount of tolerance for social situations, and there is none left for you. What did you expect? He has been forced to go to school every day an integrate himself, and there is a trade off for that.

Why was he in foster care? Who put him there?

i wouldn't actually do that. it's just a thought sometimes that he might like it better there.

I would rather be a puppy going back to the SPCA, even one that euthanizes.

Trapping someone in an unfamiliar situation with unfamiliar people who don't understand them or respect their boundaries is probably one of the worst things that can happen to a child with AS.

We are talking about children who are usually ready to have a nervous breakdown after being sent to a babysitter or day care for a few hours.

And unfortunately, in the US, most foster parents aren't all that great. They usually become foster parents because they get paid for it.

Let him. You wouldn't believe the amount of alone time people on the spectrum can need. It's nothing to take offense at.

i don't have a choice on if he goes to school or not and our local school board does not beleive in segregation as i actually pushed for that because he was having such a hard time. i had him going half days for a while last year but when he started to adjust i was told to put him in full days by his social worker who has alot of control over us.
he was in foster care from birth. he was born addicted to oxycotin. then his birth mother fought to get him back and only ended up keeping him about 2 weeks then sent him back to foster care along with another child that she had after him. after a while they decided to put him up for adoption because they didn't know who his dad was. then she finally realized if she didn't tell them she might never see him again. so at that point they contacted us and asked my other half if he was the father and who the mother was. this was the first he'd ever heard of ds and he was a couple weeks shy of his second birthday. we went up to meet him and about a week after his birthday he came to live with us. this is his 5th home not including his birthmother. i am guessing that the foster homes had a hard time dealing with his constant screaming and crying so they kept having to move him. we were never told that he was special needs or that he had any problems just that he was 'difficult' but it became pretty apparent within the first month he was struggling. well, it was apparent right away but i thought the behaviour was because he was just taken from yet another family and given to us, pretty much strangers to each other.
so the children's aid had to do some monitoring obviously once he got here to make sure that things were going well as they don't just drop off babies to strangers and hope for the best. i wish i hadn't told them that i thought something was wrong with him and that i was trying to get him help but i did and according to their guidelines they had to stay involved until 'the proper supports' were put in place and along with their involvement comes alot of rules to follow like him having to be in school full time, having to see any professionals they deam fit, and other more obvious rules that are no brainers. happily we were finally contacted by CLA which is the agency that is supposed to be the supports and the file should close soon. it has taken almost 4 years now to go through finding a doctor who will listen to us and getting a diagnosis and the referals and everything. not that i really mind the worker, she is very nice and i enjoy her visits but sometimes i find the guidelines get in the way of what is best.

anyways....sorry for going on and on and on. that should answer your questions i think.

isn't it bad for him not to spend any 'family time' together? i'm worried that he's being left out or that if he isn't spending time with us then he will eventually become disconnected from us or feel like we didn't want him around when that's not the case.

In some cases it can be, but some of us have an almost unbelievable tolerance for being alone.



Must be scary. There's not a great way to put this, but... this will give you the basic idea well enough to act on it: people are all cloaked in spheres of fire and being near them means getting burned. Whatever you feel about love, bonding... these things are important for most of us (but it takes less contact and going without them for a while is less devastating, sometimes not painful at all depending on the person and the length of time), but they can only be attempted after every other need is met and we're at our best.

And what happens if we try when we're not at our best?

We don't find love. It hurts. It can hurt a little or a lot, depending on the person and the place and the amount of overwhelm, but it will not be comfortable. And it will not result in bonding. Being at 100% is a prerequisite for being able to interact, so worrying about whether going without it will harm him is looking at it from the wrong angle.

It's an understandable angle. Eventually (not as soon as you think) he will start to suffer for having no friendly/loving contact. But as a general rule of thumb, which you will have to modify as you learn more about your son, expect it to happen for a couple of days at a time occasionally and don't worry, expect it to happen without ill effect for a few weeks in response to stress, expect that it will be necessary for months at a time only in response to severe stress, and consider whether your interactions are actually welcoming or pleasant for him if it goes on longer. And, of course, modify this as you learn what his actual needs are.

Since you actually have no choice about the bad environment, you're going to have to grit your teeth and deal with his coping mechanism.

Also, I recall that on another thread you were calling him ODD. (Sounds like he's overstressed and overly rigid and taking it out on you, as well as possibly a little screwed up from foster care, but that's just what it sounds like to me.) So it sounds like when you two are interacting, there's probably a lot of stress and tension, right? Is it possible that upsets him-- that he doesn't like making you angry, whether because he cares about you or because you do things that hurt him when you're angry-- and he's trying to avoid fights? Of course I don't know him, but that's what I would do-- that's what I have done, actually; I've spent a great deal of time isolating myself to avoid fights (and, yes, my mother used to think I was starting them because I wanted to be rude or mean or whatever)-- so it's worth considering.

Whatever is going on, I hope you figure it out and I hope you find some way to make things work for him and for you.

I did not mean to imply I was blaming you for him having to be in school. I understand it is a law. School environments can just be horribly difficult situations for children with AS to deal with, and I get frustrated with the fact that most NT's (not you in particular) really just don't get the effect that the stresses of their lifestyle on children with AS.

I spent alot of time in my room, used to run there almost every day after school, then as I got older every day after work.

By the time I was done with school I was "full" sensory-wise, I just couldn't deal with any more verbal input. The noise in the lunchroom, the halls, the teachers talking all day, all I wanted was quiet.

Have you tried communicating with him in other ways? When my son used to get like this, I used to draw him pictures or leave him notes. Because sometimes when all you just really crave is the quiet it's still easy to forget that someone cares.

Alot of my "good" days were actually bad, but I didn't want to talk about them right away, so I lied.

Good Luck.

I would just keep allowing him time to himself to de-stress. I would check in on him periodically to let him know you are there and that you care about him. Of course I am no expert, but my AS son started pre-k in the school system at 3 yrs old. He would come home from school and just want to sit in a chair in his room and listen to music. I was concerned and asked my friend who was an OT, and she said that I really needed to just let him do this until he could get adjusted to the demands of school. My son is an only child too, so he does not have to deal with interacting with siblings, and from what I recall, you have a few other kids, so this could be even more demanding on him.

As far as him not telling you too much about his school day, I think this is pretty common even with NT kids. It probably has something to do with his communication issues. I just ask my son very specific questions like "What did you have for lunch today?" Just to get conversation going. My son is 5.5 now, and a lot of times he will start to tell me about things from his day, but sometimes it is jumbled or doesn't make a lot of sense. Maybe it is all just a blur to your son, and he just doesn't quite know what you want to know. So maybe if you ask something very specific.

I would be sort of concerned about him not wanting to eat with the family, so maybe you could start with baby steps. Just an idea, but maybe you could have something that you know he really likes to get him down there. Maybe you could make a rule that he has to eat with the family at least 2 or 3 nights a week. I would just be afraid that the eating in his room could become a habit that would be real hard to break if he gets too far with this. Maybe when he is eating with you all, don't place any demands as far as conversations go.

Of course all of these are just suggestions, so please take them for what they are worth!

Good luck to you, I know your plate is very full----My heart goes out to you.

Wow. Difficult situation. But you know what? I so totally admire you for wanting to do right by this child and for not giving up.

I'm a little concerned beyond the need for de-stressing. It seems like he is locking away on multiple levels. That would be a defensive reaction, and I am wondering what has drawn him to the defense. It is of serious concern because in my non-expert observation children with AS can have tremendous control over their own mechanics, and actually create rules for themselves at a young age that eventually move into the subconscious and become near impossible to get past. My son tells me does that. Seriously.

Does he write? Is he able to use something like a tape recorder? I'm wondering if giving him a communication method that is less threatening, and that he can digest and react to in his own time, would be helpful. I would try leaving a note or recording for him that explains you understand his school day may be hard for him, and that if he needs personal space you can understand and respect that, but that you want him to know that you love him and very much want him to be part of the family. That you will not judge him negatively for sharing his honest thoughts (well, don't say that unless you are willing to truly gulp down every thought!), and that nothing would make you happier than if you were able to feel that he trusted you. Tell him that you trust and believe in him. And so on ... things that will reassure him in the ways your study of AS combined with what you know of him tells you he needs to be reassured.

Then talk to the social worker about that school rule, letting her know about the AS and what adults with the condition here have told you, and asking if there is any way to get permission to experiment with some changes.

I would, as the others said, let him keep going to his room.

However I would check in on him every so often. I would also tell him that it's ok to tell you if he had a bad day at school.

Another thing I would do is entice him to come out on occasion. You might, for example, build a tent in the family room and eat dinner in there.

Do you know what he does in his room?

well, today went very well. he came out several times to spend time with us. he also came out everytime i went upstairs to tell me he loves me. (: i love it when he says that as it's a fairly new thing for him to say to anyone. he even ate down here although not exactly with us but in the same room. i gave him a hug and he didn't cry. i had a talk with him about how we all love him very much and made sure he knew we really enjoyed having his company and especially so since he was being such a good boy today. he helped me clean up with only a small bit of crying until i explained if he wants to play ball with the baby we have to pick up all the toys so he won't fall down while chasing the ball. and he even layed with his head on my lap, i was not allowed to touch him but i'm good with that as it's pretty rare that he starts any kind of affectiony stuff. i think he spent about 4 hours engaged with us today, maybe more.

i'm not always sure what he does in his room, cronos. often he is sitting with a blanket in his chair rocking back and forth. he will usually have some cars or something with noise buttons when he's doing this and do the typical AS child tire spinning/pressing the same button over and over. he has 3 blankets he likes up there. one is a heavy blanket, one is a baby activity blanket meant to be played with on the floor that has things all over it and one is a quilt i sewed for him with lots of different colours and textures on it. he sometimes watches movies but i limit tv in the house and he doesn't know how to use the tv/dvd. i will usually put it on for him unless he has been watching it all day already. sometimes he piles up all his toys on his bed or plays with his stimming type things i bought him. other times he'll hide whatever he's doing when i check on him and cry when i ask him what he's doing. when i look it's usually just things he's supposed to have so i don't know why he tries to hide them. i always check when he hides things though because he has a history of having dangerous things up there(like knives he used to steal from the kitchen or matches, if he finds my purse he will always take the matches) these things are all locked up now though. he does on occasion destroy things in his room but not so much since he's been put on an anti-psychotic to stop him from hurting himself and screaming all the time. anyways, he has a tent with tunnels in his room too he likes to go in and blocks or magnets to make stuff from. i do check on him everytime i go upstairs and his siblings also check in with him often just to see if he wants them to play with him.

I think that's excellent that he is telling you he loves you. Children in generally really need stability early in life, and even though he didn't have that until recently, it's a very good sign for him to express affection towards you. I think it might imply that he feels safe where he is, with the people he is with, and you are an agent of security for him, and he wants you to stick around, in general.

A common reason given for people on the spectrum needing a lot of alone time is over stimulation, and that can be a large contributing factor, but I think another reason is that people on the spectrum frequently need to think about things a lot. Not necessarily complex things, or even concrete things, but things. NT children do this as well until about the age of 9 or 10, and this is best observed when the child is alone. You might see them pick up a stick and run it along a fence or doodle in the dirt in no particular fashion. They might stop to pick up a leaf and examine it, or pick at their fingers while humming. They're just allowing their brain to observe and process things, much like babies do when they stare at something.

So that is likely what he's doing.

Adults try to recapture this with things like meditation, "zen" gardens, knitting, and other mundane tasks.